Spring is the season for hiking, biking, camping, and for ticks. Lyme disease is the most common tick born disease in the U.S., but is it in Utah?
Krystal Snyder has been diagnosed with Lyme disease, a bacterial infection introduced by the bite of a tick.
The first sign of Lyme disease for some is a characteristic bulls-eye rash that develops within about a week after they are bitten. If caught early, the disease is relatively easy to cure with antibiotics.
But some people never see the first warning signs, and don't receive treatment early. Within that group, about 60% will develop arthritis. A much smaller percentage will develop other severe symptoms such as tingling hands and feet, short term memory loss, fatigue, and heart problems.
For Snyder, symptoms that included chest pain and extreme fatigue started her on a month's long medical journey to discover what was wrong. She says she was tested for many different diseases including "Pericarditis, myocardial bridge, which is like a birth defect with your artery, that was the second thing. That's what they wanted to do exploratory surgery for."
Other conditions were also suspected. "We went through a lupus diagnosis, a rheumatoid arthritis diagnosis, Sjogren's syndrome, I think that's how you pronounce it," says Snyder. "Then they said I had myofascial pain syndrome, mixed connective tissue disorder. I mean the list goes on and on."
Finally, Snyder was given a couple rounds of testing for Lyme disease and says the definitive test accepted by the Center for Disease Control came back positive. She says it's a relief, "To finally find a test that says, yes you definitely have this and a doctor that says yes, I'm going to treat you. You have all of these symptoms. You're not crazy."
While Snyder never confirmed she had a bulls-eye rash, she had seen ticks on herself and on her dogs while living in Utah, and then in Arkansas. Utah is not known for having Lyme disease and it's rare in Arkansas, so Snyder doesn't know where she got it.
John Kriesel is a physician and researcher in the Division of Infectious Diseases at the University of Utah Hospital. Both his mother and father, who live in Connecticut, have had Lyme disease.
"So the cases that I've seen in Utah have been very few and far between," says Kriesel. "And the ones I have seen have been imported, particularly from the east coast."
Utah doesn't have the Lyme transmitting tick species that lives on the East coast called Ixodes scapularis. However, the state does have the species, Ixodes pacificus that has been shown to transmit Lyme on the West coast. JoDee Baker with the Utah Department of Health says so far they have not been able to confirm that any cases originated within Utah. They also have not been able to find evidence of the Lyme bacteria, Borrelia burgdorferi in ticks in Utah, although they are looking.
"Bottom line is that we do have a tick here that can carry Lyme disease," says Baker. "All of the ticks that the Utah State University have tested for Lyme disease have come up negative. But like I said, in order to make the study more powerful and worthwhile, he needs to have several years worth of data."
Despite the evidence provided by physicians and the Health Department, there are a number of support groups in Utah that insist they or their loved ones have been infected and are dealing with the aftermath of the disease.
Jenny Jones is the spokesperson for the Utah Lyme Disease Alliance. She says one of the most frustrating things for their members is when they go to doctors to try to get treatment. She says they are always told, "We don't have Lyme disease here." She adds, "But you know I look at it and even if there was some invisible bubble around Utah, there's still people who get it like myself in Russia. And I'm here and I have Lyme disease and I need treatment. I was ignored by many, many doctors because it doesn't exist here even though I exist here. I live here, and I'm sick."
Baker agrees that doctors need to be more open to the possibility of Lyme disease patients in Utah even though there's no evidence of the disease being transmitted in the state.
"One of the things we're trying to do is educate the clinical community that ticks move just like birds move and animals move," says Baker. "So it's very possible that what they have learned in medical school historically is not accurate any more in terms of what diseases we have here."
Kriesel says the problem for doctors is that Lyme disease symptoms are similar to many other conditions. For this reason, if the patient doesn't have the characteristic bulls-eye rash, a series of blood tests are used to determine if she carries the tick-borne bacteria. A patient may undergo multiple rounds of testing because the disease is more accurately diagnosed after time has passed and the patient has built up more antibodies against the bacteria.
Kriesel says if the test results are positive, the patient is given antibiotics. If not, their symptoms might instead be caused by something else.
"Lyme disease has sometimes become a convenient catchall for people who don't have answers," says Kriesel. "You know I feel for those people, but on the other hand as an infectious disease specialist, we don't want to expose people unnecessarily to antibiotics, and other long-term expensive treatments that can be harmful, without good reason."
According to the Center for Disease Control, 10-20% of patients have lingering symptoms even after treatment. Current evidence suggests further antibiotic treatments are not helpful in these cases.
Snyder, who may have such long-term symptoms, says she's taking it one day at a time.
"I'm just on a journey and wanting to get back to health and wanting to get back to my life."
Borrelia burgdorferi is not the only pathogen that is carried by ticks. In Utah, cases of Rocky Mountain Spotted Fever, Colorado Tick Fever, and Tick-born Relapsing Fever among others have been reported. Wearing long sleeves, applying certain bug sprays, and doing a tick check after spending time outdoors can help prevent these illnesses.
Bullseye rash (Erythema migrans)
photo credit: Center for Disease Control